But for people living with primary-progressive multiple sclerosis (PPMS), there are no relapses or remissions. Typically, symptoms that are present from the initial onset of disease gradually — or sometimes rapidly — get worse over time. PPMS affects about 15 percent of people with MS, and it can be harder to diagnose than relapsing-remitting MS since its symptoms do not appear as suddenly. If you have PPMS, symptoms like numbness, vision issues, depression or mood changes, and difficulty with strength, walking, and balance, can throw a monkey wrench in your day-to-day routine. While progression of the disease can slow down for periods of time, PPMS eventually leads to loss of neurological function, usually affecting the ability to walk and perform physical tasks independently. While only one drug has been approved to treat PPMS, a variety of devices can help make daily life with the condition easier. Taking proactive steps to adapt to your symptoms can not only improve day-to-day quality of life but also mitigate progression of the disease. Not sure where to start? Check out these six technological and adaptive device recommendations from one man who lives with PPMS, as well as experts who treat people with the condition.
1. Voice-Activated Systems
If PPMS has made it difficult for you to move around or manipulate tech devices that require fine motor control, such as a smartphone — but hasn’t impacted your speech — voice-activated systems can make many things more accessible to you. Mitch Sturgeon, a blogger with PPMS and author of Enjoying the Ride, says the makers of Apple and Android smartphones have made significant strides in voice accessibility over the past decade. Having a phone with a voice-activated system that can type texts and emails, answer calls, or open and close apps is crucial for Sturgeon, who cannot use his hands to control his phone. And for his Windows computer, Sturgeon likes to use the voice recognition system Dragon Naturally Speaking, which he credits with helping him write his entire book. The system is simple and can perform tasks in addition to simply transcribing speech into text. According to Sturgeon, it far outperforms the native systems on Windows computers. Voice-activated systems can be helpful for operating household devices as well. Many people with PPMS — Sturgeon included — have heat intolerance. One helpful item for Sturgeon has been his voice-activated ceiling fan powered by Samsung SmartThings, which allows him to make adjustments while in bed without assistance or waking anyone else up during the night. RELATED: 6 Hand Exercises for Multiple Sclerosis
2. Assistive Robotic Arm
For people with PPMS who have lost mobility in their arms or hands, the Kinova Jaco Assistive Robotic Arm can be life-changing, says Sturgeon. The arm is flexible and features 16 different movements to correspond to the motions of a human arm. Sturgeon jokes that the arm is a “glorified drink holder” — but in all seriousness, he says, the arm allows him much more autonomy, enabling him to eat and drink independently, push buttons, and navigate his home with much less assistance. It attaches to his wheelchair and is navigable through a joystick on the chair. The arm is expensive without insurance coverage — Sturgeon noted his robotic arm cost about $60,000 without insurance. To access this product, Sturgeon recommends consulting your physician or an occupational therapist, as well as your health insurance company to see if they’ll cover the cost. RELATED: Adaptive Clothing for Disabilities and Body Differences
3. Wheelchairs
Many people with PPMS need to use a wheelchair as a mobility aid intermittently or full-time. Your medical team can help you to decide whether you need a manual or power wheelchair — and it’s important to be proactive about using a wheelchair if you need one to avoid injury, says Patricia K. Coyle, MD, a neurologist and director of the MS Comprehensive Care Center at Stony Brook University School of Medicine in New York. “If you have a fall and a fracture, that’s a major setback. We want to avoid an unfortunate circumstance that would be negative,” Dr. Coyle explains. Sturgeon uses a Permobil Wheelchair for day-to-day mobility both inside and outside the house. The chair is motorized and comes with many amenities, including a joystick controller to connect to his phone and computer, an attachment to operate his assistive robotic arm, and an elevation feature to help reach high-up objects or meet someone at eye level when speaking — which Sturgeon finds particularly useful. “Always having to look up constantly reminds you of your situation,” he says. “At eye level, for a few minutes here and there, they can forget I’m in a wheelchair at all.” This particular wheelchair can be pricey without insurance coverage, Sturgeon adds. But even if you can only afford a lower-cost motorized wheelchair, Sturgeon advises looking for comfortable seating, reclining ability, and leg elevation. An occupational therapist can help you find a wheelchair with these features, he advises. Not considering these aspects, along with chair size, can cause discomfort and cut off blood circulation, which can lead to further issues including back pain, leg stiffness, and pressure ulcers.
4. Mindfulness Meditation Apps
Many people with PPMS experience cognitive decline over time, but certain programs and activities can help to slow that decline. One activity that may help is mindfulness meditation, which has broadly been shown to improve cognitive focus and benefit emotional health, says Leigh Charvet, PhD, a professor of clinical neuropsychology at NYU Grossman School of Medicine at NYU Langone Health in New York City. “Mindfulness has a preservational effect. Research studies suggest that mindfulness meditation practice, and reducing distress in general, may improve overall quality of life and may reduce symptom burden in MS,” Dr. Charvet explains. While Charvet doesn’t recommend any single commercial product for mindfulness, she has found Headspace ($12.99 per month) and The 10 Minute Mind ($9 per month) to offer easy starting points. Both apps feature short mindfulness activities, which Charvet notes can be very practical timewise. Plus, evidence suggests even 10 minutes of mindfulness meditation per day can confer benefits, Charvet adds. In a study published in September 2018 in Scientific Reports, participants who practiced mindful breathing meditation about four times per week for 10 minutes each time showed improved short-term memory after two months. Another study published in Memory & Cognition in June 2019 found that a group performing a 10-minute mindfulness session demonstrated improved verbal learning and memory over a control group immediately after. RELATED: How Mindfulness Can Reduce Stress and Improve Quality of Life for People With MS
5. Transcranial Direct Current Stimulation Devices
Transcranial direct current stimulation is a type of noninvasive brain stimulation that can be used to treat cognitive, speech, and motor symptoms for people with PPMS and similar neurological conditions. According to Charvet, transcranial direct current stimulation has “a large body of evidence showing it may help with a wide variety of aspects of people living with MS, to improve mood, and treat depression.” The program is done completely virtually, even for an initial visit — making the program more accessible for people who have difficulty traveling. Patients can enroll in a personalized program that provides an electrode headset, which applies a low-grade electrical current to the scalp and offers activities such as seated motor exercises and computer games. Treatment packages at NYU Langone Health cost about $30 per session (including the equipment rental), but the program is not covered by insurance, Charvet notes. Though still being studied in clinical trials, it’s open to anyone interested in participating. RELATED: Telemedicine for MS Care: 2 Thumbs Up
6. MS Management Apps
Certain apps can help you track your day-to-day PPMS symptoms and treatment and help you remember any medical appointments you may have. They may also make it easier to share information with your MS care provider. “You can use apps to track your walking ability, information and knowledge about MS, and problematic symptoms of MS,” Coyle says, adding that these metrics can be used to track disease progression, which helps in understanding how quickly symptoms are worsening. Coyle does not recommend any specific app but instead suggests people find the one that works best for them. Some popular apps include My MS Manager, developed by the Multiple Sclerosis Association of America, and CareZone. Both apps allow you to schedule and track appointments and medications, enter your symptoms, and more.
How to Access MS-Friendly Tech
Consult your doctor or a physical or occupational therapist for suggestions for devices that can help you with your day-to-day routine. No two cases of PPMS are alike, so you’ll want to find devices that align with your particular needs and symptoms. And while these products can ease day-to-day life, it’s no secret that they can be costly. “The average MS patient is limited by finances, because very little technology is covered by insurance,” Sturgeon says. Take his voice-activated ceiling fan, for example — while his fan cost only $25, Sturgeon says it cost about $100 for the fan to be set up for voice automation. Thus, people seeking some of the technology above, particularly a more expensive item like a motorized wheelchair or robotic arm, may want to look for assistance in paying for it. The Multiple Sclerosis Foundation offers an Assistive Technology Program, which can partially or fully fund devices such as mobility aids and home modifications. The foundation also offers a Healthcare Assistance Grant and Emergency Assistance Grant to assist with costs in visiting doctors or specialists, as well as basic expenses such as rent, utilities, and medication. The Multiple Sclerosis Association of America (MSAA) also provides financial support for equipment through its Equipment Distribution Program, in which the MSAA ships equipment to participants free of charge every three years. Additionally, for people looking to acquire equipment at a discount, the site Disabled Dealer allows users to comparison shop used devices. The site does not directly sell products and instead facilitates private sales, so be sure to consult your physical or occupational therapist about any specific device, as well as confirm the legitimacy of a posted item. To learn about more products that may be helpful to you, New Mobility offers information on wheelchairs and other adaptive devices.
